"You're Thor? Well it hurts."

Had to think of a lighthearted title to go with an unintentional stab today. We are blessed to receive long term disability and Social Security for Mon Amour. Without them we would be in trouble. Losing Mon Amour's job before HR mentioned he should apply for disability made for a very scary time. I'm not afraid to work and I'm skilled to re-enter the work force at a salary that could cover what Disability and SS cover. However, Mon Amour's health conditions mean I cannot leave him alone for too long let alone our 3 children at home. 

Yes, I could send Monkey #3 to public school (which we really don't want to for a multitude of reasons, one includes her own health). But there are still Monkeys #4 and #5 who aren't school age, yet. My work from home skills are being taken over by AI. Last year I spent lots of time and money to set up a home business where I teach preschool music classes. But I started that route when I wanted it to be a supplement that I could build as the children got older and could take more responsibility in their home schooling. I'd set up all but one step when we learned of his terminal diagnosis. I have calculated--I would need to teach at least 20 classes to make what our family needs to stay in our home (which is our 2nd goal after our 1st of continuing to home school). And most of those classes would need to be the higher level curriculum which I'm not trained for, yet, and which I wouldn't be able to keep up with company policy for amount of students because of size restrictions my city has placed on home businesses. Even if I was allowed smaller classes, I would need the interest. I'm struggling getting 5 students signed up for my 1 class. I can't imagine being able to find 100 students every semester, even with the 3-year commitment in the higher curriculum. So I am seeking out other work-from-home jobs while trying to take care of all the other tasks this new chapter as added in to my life. 

Disability and SS just barely cover the regular monthly expenses we have. They never account for the medical bills which we can't plan for as easily. I'm a Dave Ramsey financial fan, but we're not at a spot where we can set money aside for even the one month emergency fund. We're trying, but there's just not enough. 

I'm not necessarily ashamed, but I guess I have a twinge of embarrassment or guilt that we now have WIC. We have used free lunches the schools give in the summer for the last 2 years. And now I go to our nearest food pantry each week to stretch what we get with WIC and our smaller grocery budget. Over and over I quote the scripture of "If I had, I would give." Because I have done so in the past, and hope so strongly I can be in such a position again one day. But right now, I'm not. And it is extremely humbling. It can make standing in line at the food pantry difficult. 

However, the people I have met in line have been kind and interesting. Sharing umbrellas in a snow fall. saving spots in line for the elderly and disabled so they can wait out the cold in their vehicles. Telling stories of their lives. It's enlightening and camaraderie. The volunteers are upbeat, polite, patient, and also kind. I've appreciated their familiar faces even if they don't necessarily recognize mine. I have appreciated their kindness to my kids the couple times they've had to wait with me. And I appreciate that they will walk my box of food to my vehicle and load it for me. The last several weeks, the various gentlemen who have loaded my van have given me the head's up to be careful getting the box back out because it's heavy. Lots of canned goods, so understandable. A nice "be careful--it's heavy" each week. So kind.

And today the gentlemen was also being kind. He'd been teasing that I would eat all the donuts we had been given. I had laughed back and told him I didn't actually like sweet foods much, but we'd be ok because I had a husband and 3 kids at home. To which he smiled and agreed there wouldn't be a problem then. But as he finished loading my van, he said, "Make sure your husband gets that for you--it's heavy." 

And I smiled. Because that's what I do. 

Even though it stabbed my heart. I can go up to a few hours some times without having to be reminded of all the things that are up to me now because my husband can't. And then the reminder comes in one of its many varied forms. And I ache. I ache for me and the tiredness that overwhelms me. I ache for me at the broken dream growing old together and attempting to help each other even in our weaker states. I ache for my husband who had the ability to help in even the little things taken away. I ache that he aches over all this, too. 

Someone recently wondered aloud to me with no answer because neither of us could really say: Which is worse? Losing someone suddenly or losing them gradually? Because I've seen many friends and loved ones lose someone suddenly. My own brother, when they found his cancer was back, was gone within 3 weeks. Not as sudden as an accident might be, but it was still pretty quick. We had the blessing of saying goodbye, which the even more sudden deaths do not. And I feel it is a blessing that we have an unknown but far from sudden amount of time to create memories so we are ready when the good-bye comes. But that blessing can also hurt. Especially when it comes with limitations of what he and we can do. 

So, there's some honesty for you as you glimpse at what our life is like right now. And what my emotional state often is dealing with. In order to not dwell on something negative, especially right before I go to sleep, here are two completely unrelated positive that brought me joy today:

1) after several years of wanting to, the kids and I finally started to create our fairy gardens today. We're doing the Dollar store and Goodwill way, but it's fun. So cute to see them make theirs, and really stress relieving as I created mine.

2) FB reminded me that Monkey #3 crawled for the first time 6 years ago, when she was 15 months old. Countless things about her life are a miracle. From the experiences of her and her life, it's hard not to see the blessings we've been showered with even in this harder bend in our road.

Caregiver of Young and Old

Warning: This post full of TMI about bodily fluids/excretions. 

Over my years of friends, social media, magazines, and other sources of people's personal stories, I either heard about what it was like to be a caregiver of young or a caregiver of old. I haven't heard very many from those who are both. I'm sure there are plenty out there. But not many come up in my searches. Maybe because we're so exhausted from the 2 same but different roles that we're not writing the experiences down. Or maybe we're too embarrassed to share what it can look like. Like the last 2 weeks. Our family managed to get 4 differently bodily excretions within the same 20 foot radius. In case you aren't sure what those 4 could be, they were Blood, Feces, Urine, and Vomit. In that order.

Mon Amour stumble-fell while putting the kids to bed 2 weeks ago. Smacked his head into their triple bunk bed. Broke his glasses frame which cut his eyelid. In the time it took me to get to him and help him to the bathroom where I could tend to the wound with light and not scaring the kids from the sight, we left a lovely trail of blood with some occasional stop off spots that brought about larger areas of drippage.

A couple days later the younger boys had a small bout of diarrhea that lasted less than 24 hours. But it was one of those "I feel fine but when I passed what I thought was gas it was more than gas and....oops" kind. As someone in Mon Amour's family said when growing up, "Never trust your bum" to which several years later one of our Monkeys modified with "Never trust a toot!" This is the only reason I ever bought (and kept) pull-ups during the kids' early toilet using years because it's hard enough to manage all those bathroom skills when you're little. Let's not add to the mess when your body betrays you and doesn't give you the time to properly use those bathroom skills. But even with those, the messes still happen. Gratefully all stayed within the bathroom and none on the carpeted bedroom or vanity/foyer area.

But along those lines is my Monkey #4 who has sleep walking issues. I'm positive he has bladder issues that need a doctor's attention, but his doctor wants him to spend a year focused on his bowels as that can often be an underlying cause. I don't doubt that, but I'm 99% positive that is not his problem. However, I'm doing my due diligence by the doctor and spending yet another year of making sure Monkey does not need to use the toilet within the first 3-4 hours of sleep. Otherwise he does so while walking in his sleep, and his occasional disorientation from that either prevents him from getting to the toilet on time or leaves him in places that aren't the bathroom. I get a lot of midnight clean-ups from this, as you may imagine. And this one, not even a week after the Bunk Bed vs Glasses Fall, had the trail of urine follow the EXACT trail of the blood.

And then one week after that, Monkeys 3-5 and myself all came down with some degree of a cold. We had managed to avoid it all cold season, so we kind of knew our number was up. Gratefully we kept Mon Amour pretty healthy during it. And the rest of us were mostly the runny/stuffy noses. Except for Monkey #3. Who will always get a cough even when no one else does, because that's what happens in her CDH-inspired life. And not just a cough for a couple days. It will last her weeks. It's why we isolated the first 5 years of her life, and still go into a mild isolation when things get medically tense around us. 

But not only does she succumb more easily to colds and coughs than the rest of us, she also has a strange eating thing. I don't know if it is CDH-inspired. I've asked around with other moms to see if it's a normal thing and only heard of one child who has this (who does not have CDH). But if she goes too long without food, she starts to vomit. She holds absolutely nothing down, including sips of water. It took 2 trips to the ER and 1 to the pediatrician before we just chalked this up to making sure she always has something in her belly. (Which has been difficult during her 3 bouts of gastroenteritis in the last 4 years!) Gratefully, the pediatrician gave us a bottle of anti-nausea/anti-vomit pills. She has to take half a pill (thank you pill cutter that we've had since she was an infant!) to try and stop the vomiting. Usually it works immediately and she's able to keep things down within 10 minutes. A couple times she unfortunately vomited soon after taking the pill so the effects weren't able to take effect. 

One of those times--because she's supposed to wait 6-8 hours between pills and we weren't sure if we should try again with another pill so soon and had us waiting several more hours of vomiting and nearing dehydration--sent us to the ER yet again with 6 month old baby brother in tow because they couldn't tell us over the phone if we could just give her another dose. We were finally admitted. By that point, it had been 6 hours that if we had been home I could have given her the dose myself. But they administered the dose. Gave her some goldfish crackers, a cup of Gatorade, and a stuffed Peanuts' Woodstuck toy. A friend described it as the most expensive Kids' Meal we would ever pay for. I insisted she give the toy Woodstock to her baby brother who had endured 3 hours in the ER with us and who, at the time, had only 3 stuffed toys compared to her dozens and dozens.

Sorry, for the tangent. It's a "fun" story to tell related to her stomach issues. And is part of being a caregiver to a "medically complex" young child. Especially one who would occasionally in typical toddler-ness fight us about eating even when she knew that if she didn't eat enough she would start to vomit. Over the years we have worked it out well. She doesn't need to eat full meals. Just a couple of bites of something every few hours. Then eat enough at dinner (and make sure she has a snack if dinner is 3+ hours before bedtime) to last her through sleeping and not wait too long after waking before eating something. She's mastered this very well. 

But not a couple of days ago....maybe? I'm still confused as to what happened. She had had an enormous dinner the night before because it was one of her favorite meals. She didn't eat to the point of feeling full and stretched, but she'd eaten plenty. And had done the same all day. It was a really good eating day. But the following morning she was starting to feel the effects of the cold that had been creeping in the night before. We already knew she wouldn't be going to her swim lesson. So I ran out to do an errand, and while I was out I got a text from Mon Amour that she had vomited. That wasn't part of the cold symptoms for everyone else. There were no other signs of being gastroenteritis. She hadn't been feeling badly beyond cold symptoms. And she had eaten well the previous 24 hours. It was a bit uncharacteristic as to why it happened. Maybe her cold made her food move through her system faster? Maybe stomach issues could be creeping in to being some of her cold symptoms? Who knows.

But it was her typical course of not being able to keep saltines, bread, or simply sips of water down. Mon Amour has not been main caretaker during her life so, of course, had no idea where her pills are or how to cut and administer. Thus I had to get home to not only get her the meds before she got worse but also finish cleaning up the vomit that had managed to be along the exact same trail as the Blood and Urine! (Mon Amour had cleaned up what had gotten on clothes and whatnot, but the nitty gritty of what made it in the harder to see places was up to me.)

So what is it like to be a caregiver to young and old at the same time? For me, one of the things is this. Mess after mess after mess. Messes times four., sometimes messes times six since tweens and teens bring their own messes, too. It's not the toy or book messes that the kids can help clean. They're the "it's a dirty job and at this point of our family's life Mum is the only one with the knowledge, capability, and ability to clean it" job. Some times it's nice to feel needed. Some times I'm exhausted from what seems to never end. Some times I'm on automatic and I don't even realize because it's just part of our life now. 

But this part of our family's phase will change one day. And I'll encounter other things. For now I'll do the tasks that present themselves. If only our carpet cleaner weren't half broken and would perform the drying function as well as the washing function so we didn't have to stay off the wet, cleaned carpet for 2 days. Oh well. Can't have it all!